While at the 2007 U.S. Conference on HIV/ AIDS in Palm Springs, California, I attended a meeting on the Ryan White CARE Act. The Ryan White Act funds HIV medical care and support for people in the U.S. who don't have health insurance or adequate insurance to cover their bills. The Ryan White Act is scheduled to be re-approved in 2009, and many people think it needs to be completely overhauled.

Click here to take an online survey on your experience with free and reduced cost services in the United States.

If you would like to host your own town hall meeting, contact Christine Campbell of the Campaign to End AIDS at (202) 408-0305 or campbell@housingworks.org.

This "town hall meeting," was an open forum where anyone could share their firsthand experience with Ryan White-funded services, such as free clinics, transportation and case management. It was the third of its kind this year, sponsored by the Campaign to End AIDS and the National Association of People With AIDS.

Many people spoke at the loosely structured meeting, and we've grouped the highlights by topic. Ryan White advocates present at the meeting plan to take these complaints and suggestions to the office of Senator Ted Kennedy of Massachusetts, a Ryan White ally. They want to gather information from people using Ryan White services in as many parts of the country as possible, so that the input of the people most affected by the act can be used to reform it.

Readers who want to share their experiences using HIV clinics (which generally are supported by Ryan White funding), and take part in shaping United States law at the same time, are invited to host Ryan White meetings of their own. Contact Christine Campbell of the Campaign to End AIDS at 202-408-0305 or Campbell@housingworks.org for more information, or a toolkit for hosting a Ryan White meeting in your town.

In this section, you'll read an incisive review of some of the problems with the Ryan White CARE Act from Michael Kink, legislative council for Housing Works.

My name is Michael Kink. I'm legislative counsel for Housing Works in Albany, New York, and Washington D.C. I think it's important to talk a little bit about how we got here. How did we end up with what we've got and where did some of these problems that people are talking about come from?

Michael Kink, legislative counsel for Housing Works in Albany, New York, and Washington D.C.

I think -- I'm going to bleed a little bit into the next part because I think it's the only way to illustrate how we got what we got. We've got a system that was built on what was politically possible 15 years ago. We got an old car we've been patching together and trying to make work, trying to keep on the road. I heard some guys talking this morning about, they were driving in a rainstorm and to make the windshield wipers work, they tied it up with bailing wire and they were pulling from the inside to make the windshield wipers go back and forth through the storm. That's where we're at. That's what's happening. It doesn't meet standards of care. When we hear from people [with HIV], some people get what you're supposed to get in D.C. but they don't get it in Maryland. Some people get things in Sacramento, but they don't get them in Riverside, San Bernardino.

"We know what someone living with HIV needs. We know the medications they need, we know the primary care they need, we know the tests they should be getting. We know the platform, the foundation for care, case management, housing. We know that. Academics have studied it; we've been treating HIV for 25 years. But our system here in the United States -- Ryan White, Medicaid, Medicare -- this crazy quilt, does not make sure that we comply with these standards of care."

Michael Kink

Our system does not [ensure] medical standards -- that we know about, that were created by the experts. We know what someone living with HIV needs. We know the medications they need, we know the primary care they need, we know the tests they should be getting. We know the platform, the foundation for care, case management, housing. We know that. Academics have studied it; we've been treating HIV for 25 years. But our system here in the United States -- Ryan White, Medicaid, Medicare -- this crazy quilt, does not make sure that we comply with these standards of care.

It's not affordable to work full time under the poverty level. You pay $1,300 a month for rent, you pay $300 a month on your co pays, not for your HIV meds. There is no money for food, for kids, for childcare, for transportation. I don't have to tell you the details. Some people get some things that they need. Some people get a 50 percent success story. I'm glad there's a 50 percent success story, but this is not a system that is set up to succeed and to get people what they need.

If programs can take money and segregate and serve who they want to serve and blackball someone who says they're not getting what they need, the system is not accountable -- it's not transparent. They work for us, right? This is a publicly funded system. The taxpayers are providing billions of dollars for HIV care in the United States. You work hard. You pay taxes. People that may or may not be unable to work now, during times in their lives, paid taxes. Our parents, our brothers, our sisters, our loved ones, everybody pays in. This is supposed to be a public system, and it is not accountable. We are not getting the bang for the buck.

There are structural reasons that some of these things are in place. Ryan White is a categorical program. Every year, people like Carl Schmid [director of federal affairs for the AIDS Institute in Washington, D.C.] have to go up to Congress and beg for money to fund the Ryan White system. Christine [Campbell, Housing Works director of national advocacy], Bill [McCall, political director at AIDS Action], other people that are in here, Nancy [Bernstein, executive director at National AIDS Housing Coalition], everyone has to go to Congress to say, "Give us the money we need this year."

We talk about flat funding, right? There are more and more and more people that are HIV positive, more and more people that are living with AIDS, and yet the money stays flat, flat, flat. In a different system like Medicare, like Medicaid, that's funded on an entitlement basis, you get the medically necessary benefits and services, and the government pays for the services that it delivers. So we don't have to go to Congress year after year to pay for the Medicaid program. We have a title that was written [decades ago] when Lyndon Johnson was president, that said, "We're going to set up a system that meets the essential health care needs of very low income people." We don't have that in the field of HIV. ...

"Medicaid is the biggest payer for HIV care in the country. But there is a crazy quilt of eligibility standards. There's one standard in California, there's one standard in New York. There's another, very much lower standard, in poorer states, particularly across the South."

Michael Kink

Carl [Schmid] said Medicaid is the biggest payer for HIV care in the country. But there is a crazy quilt of eligibility standards. There's one standard in California, there's one standard in New York. There's another, very much lower standard, in poorer states, particularly across the South. So, in many states, people have to get HIV, get a bunch of opportunistic infections, get a diagnosis of AIDS, and then they can get Medicaid. That's Louisiana, right? But someone in New York, who has a very low income, will get Medicaid, regardless of their disability status, regardless of their HIV status. So we can keep people healthy by providing them standard care earlier so that no one has to get sick and eventually get Medicaid. One of the policy options we talked about that is out there is Early Treatment for HIV Act that would expand Medicaid eligibility nationwide for everyone that is HIV positive. It would cut the AIDS death rate in half, simply by getting people what they need when they need it. But we don't have that.

So what we've got is a crazy quilt of Ryan White, Medicaid and Medicare, state and local funding programs. We have clinics that are serving people that are all in the same position. Everybody needs the same meds, everyone needs the same primary care, everyone needs the same tests, everyone needs the same case management services and housing. And yet, different people, even in the same agency, get different things, depending on their income, depending on their eligibility, depending on how much money is there in the given year. There are waiting lists.

When we were in South Carolina, people had no dental care for three years, and all of the sudden, they had to spend some extra money. They put people on buses and took them to dental clinics. And in one afternoon, everyone got three years of dental care. That is not an effectively managed system, and I would argue that we don't have to put up with this anymore.

We don't have to put up with Ryan White anymore. We have presidential candidates in both parties that are talking about universal health coverage. We've got candidates in both parties that are saying that health care needs to be provided to everybody, needs to be universal, needs to be affordable. We have health care providers all around the country. We have 20 years of the epidemic, an ability to bring standards of care to these huge health systems that we have. I'm not a huge fan of insurance companies and HMOs, but they're there. People should be getting care from experienced HIV doctors, but HMOs and insurance companies are set up so they could, conceivably, if we paid them money and held them accountable, they could make sure that everyone they're serving that is HIV positive was on the right meds, getting the right tests, seeing the right doctor, getting the right amount of services. This is not rocket science in the 21st century. There are specialized things that HIV docs can and need to do. But the basic, large-scale, covering 1 million people living with HIV in the United States and keeping them healthy, we can do that. Right now we don't have the political will to make that happen.

The last Ryan White reauthorization set different parts of the country against each other. Regular people with HIV/AIDS weren't informed or mobilized enough to know or to be involved in the fight. That's why this process is starting early: so that people can go in and fight. There weren't enough people. There were some people fighting and working effectively. But there were many people in the South who said, "Get on a bus, come to Washington, and tell people in Washington we should steal money from the North."

There were people from rural areas who said, "Get on a bus, come to Washington, we need to steal from the cities and get it to rural areas." But there were people all over the country saying, "Don't give us a pie that's not big enough for all of us. Give us a pie so that everybody can get the care they need; that it's everyone and everyone gets what they need; that it's affordable, and we make sure that the people that are serving us are accountable."

We have a chance to do it differently in 2009. We're going to have a president that's committed to universal health care. We're going to have a Congress that is more committed. It's not a perfect world, and it's not going to be a perfect world. But I think it can be a better world than we have now if we fight for things that we really need, instead of accepting crumbs from a table that doesn't have enough.

Accessing HIV Care in Rural California

In the section that follows, you'll hear two HIV-positive advocates discuss challenges faced by rural and suburban areas receiving Ryan White-funded services. We'll hear first from Loreen Willenberg of Lake Elsinore, California, an outspoken activist who has been living with HIV since 1992.

My name is Loreen Willenberg, and I originally hail from a very small town called Placerville, which is a foothills community in the Sierra Nevadas. It's located halfway between Sacramento and South Lake Tahoe. Even though I'm not a native of that town, I spent 24 years there, conducting my own small landscape design business, and indeed that's where I received my HIV-positive diagnosis in 1992. I became involved in the Ryan White CARE Act, because we had a local consortium that was dual county: It was El Dorado County and Alpine County, which is very far-flung. ... We were very rural at that time. When HRSA (Health Resources and Services Administration) mandated rural consortia out of existence to put planning councils in place, our group got disbanded and the planning council was convened then in Sacramento which, for me, was a 65-mile round trip. The planning council in Sacramento is still in place. It's a 45-member group. I was a member of the Sacramento planning council a year ago, but recently relocated to yet another rural community.

Loreen Willenberg of Lake Elsinore, California, an outspoken activist who has been living with HIV since 1992.

I'm speaking out because I feel I'm a representative at large of rural communities. The one which I'm involved in is Riverside County, and I'm finding that because of the recent re-modernization or restructuring of the current Ryan White CARE Act, what has happened is that we in the rural communities -- we consumers, that is -- have been left in a lurch, as our case management offices are closed.

Up as recently as two weeks ago, I heard out of 70 consumers, there are probably 10 individuals who do not own transportation. This is rural Riverside County now I'm talking about. So in order for them to access their case management worker, whose office has been closed locally, that would have been within, say, a 20-minute drive of where we live, now they are looking at the same thing I was looking at up north: a 75- to 90-mile round trip to access their clinic, to access their case management worker, et cetera.

I'm here this evening not necessarily to speak for myself, but for 70 individuals who are distressed, who are basically feeling left out, forgotten, cut off, all of those horror stories that might, I think, be happening on a national level in so many other rural communities. I just wanted to immediately voice that. ... I can't seem to get answers from the individuals seated in authority -- say, what are you going to do for us?

Accessing HIV Care in Maryland

Now we'll hear from Cecily Carroll, an advocate for people with HIV at Washington Hospital Center in D.C.

I'm Cecily and I live in Germantown, Maryland, but I work in Washington, D.C. What I'm having issues with now is the fact that I live in Montgomery County, which they consider to be one of the richest counties in Maryland, and so there is no [HIV] funding in Montgomery County. I moved there in 2001. The HOPWA (Housing Opportunities for Persons with AIDS) list has been closed since prior to me moving there, and it still has not opened, and it's now 2007; they're not accepting any more applications.

In terms of health care, if you don't have Medicaid, you don't have Medicare, you have to drive. Like I said, I live in Germantown, and the closest health department where I can get medical is Silver Spring, which is 20 to 25 miles from where I am. I think there should be more services further north of Silver Spring, which is where the health department is.

Where I work, in D.C. at a hospital, I'm also finding that a lot of the patients that I work with are migrating from Maryland to D.C. where the funding is. I don't understand that because our EMA (eligible metropolitan area) is Maryland, Virginia, West Virginia and D.C. So why is all the money there in D.C. and not spread throughout our entire EMA?

I work full time, but I'm still considered under the poverty level- ... I do know that Ryan White is supposed to be considered a source of last resort. But folks like me who work, ... "should be able to [pay]," which is not always the case. Folks don't see it that way.

My case manager is like, "OK, so what are you doing with your money?" I'm paying $1,300 a month for rent, and I'm bringing home less than $2,000 a month when you take out taxes and all that other crap. I'm on a whole lot of medicines other than HIV meds. [ADAP (AIDS Drug Assistance Programs)] might cover the HIV meds, they might cover the Lipitor that covers the cholesterol that HIV meds is giving me, but then what happens to the rest of the stuff? My copay each month is almost $300. That's without the HIV meds.

Accessing Ryan White-Funded Dental Care

In this section, two activists with HIV talk about accessing Ryan White-funded dental care. We'll hear first from Loreen Willenberg of Lake Elsinore, California.

Personally speaking, I benefited from having [Ryan White-funded services] I developed gum disease. I was uninsured, although I was self-employed and making X amount of dollars, I couldn't afford to buy health insurance or dental insurance, and received assistance then to have the surgery on the top half [of my mouth]. But, I'll tell you something: I actually needed the surgery on the bottom half, too. Because of the cutbacks -- in Sacramento now, this was about a year ago -- I needed to not have that because of the cap per head, and so I still have the blazing infection on the bottom. [I have] nowhere to go because I've heard that that dental assistance is no longer available and that several of the dentists in the area have ceased accepting people in my circumstances.

So it was a ... 50 percent success. I'm very appreciative of that, by the way, because had I not benefited from that surgery, my upper teeth would be gone. So I want to say how grateful I am for those services being available, but if let go the bottom part, now that I'm in my 50s and I am HIV positive, I have to be concerned that the longer it goes that I might have an infection that will, eventually, hurt my immune system. So there's a level of stress there. It's always in the back [of my mind].

Now we'll hear from Fortunata Kasege, one of the meeting's hosts. Fortunata is originally from East Africa. Now she works in Houston, Texas, for the Campaign to End AIDS.

The other thing is just to make sure that [we have] the dental care, the drugs, assistance, rehabilitation, all those other supportive services. I can talk about dental care, because I come from a big city, and there are thousands of people who rely on one little clinic that's there. I know how dental health is important for people who live with HIV. You don't want to get some other crazy infections to jeopardize your already weak immune system.

Getting Free HIV Care and Treatment When You're Undocumented

Two HIV advocates in the following section discuss Ryan White-funded services for undocumented workers. The first speaker will be HIV-positive advocate and East African immigrant Fortunata Kasege, of the Campaign to End AIDS in Houston, Texas.

In Houston, where I'm receiving these services, personally, it's all that I rely on. The clinic that I go to, because of my immigration status, I can't qualify for the Medicare, Medicaid stuff. My doctor and I were discussing that it's probably time for me to start considering the medicine. We were talking about how he's going to get paid. I was not qualified and the only thing is ADAP, and of course, the money goes there. This is my life, this is it. It has to be good, it has to be perfect for it to work for me and for it to be something that I put my life to rely on it.

... We got through this reauthorization, thank God, without [immigration status] becoming an issue. With a Republican Congress, we really thought it was going to be an issue, because immigration was a big, big issue. But people can access Ryan White services who are undocumented but they can't access other services. We have to continue [to work on this]. There's going to be more of a burden on Ryan White because of that.

Standing Up for Yourself and Getting the Help You Need

In this section, two people living with HIV describe how they've stood up for themselves to get the services they needed. We'll hear first from Rev. Joyce Turner-Keller, who founded and runs a service agency called Aspirations Holistic Tutorial Services in Baton Rouge, Louisiana.

The issue of being complacent: I had not accessed services since January [of 2007], simply because there was such a turnover in the office [of] the agency where I was getting services. Every time I would call, I would be told that "you don't need it." ... I was denied those things that I was rightly entitled to. So I did without receiving any services from January up until a month ago, and I finally just had to go in and ask for help, to get medicine, because I found out I had pneumonia. Some of the medicines that the doctors were giving me were not in a formulary. So you suffer for a week and you know that you cannot take it any longer, so you had to bite the bullet.

"It is inhuman that these people are employed by us, and we have to beg and grovel at their feet to get basic needs. I think it's deplorable, so I am definitely complaining about it."

Joyce Turner-Keller

I called the agency, and for three days, I was told, "We can't find your file." These people are Ryan White recipients. I'm a consumer. But they assumed, because of what I look like, the way I speak, the way I carry myself, I don't need the services. ... It is inhuman that these people are employed by us, and we have to beg and grovel at their feet to get basic needs. I think it's deplorable, so I am definitely complaining about it.

I think that our health care should be an entitlement. We're human beings. Everybody should be entitled to preventive health care. When I spoke to Senator Kennedy's office and the question was posed to me, "What do you want?" I said to myself, "I want George Bush and all of the senators' health care. I want to know that when my meds are no longer working, that the next med I need is in my formulary. I want you to save my life, that's what I want. I want universal care. I want to be entitled to good, effective, efficient, affordable, accessible health care."

Next we'll hear from Cecily Carroll, an advocate for people with HIV at Washington Hospital Center in D.C.

I don't have that problem in terms of being blackballed, because I have no problem with opening up my mouth. If I know that there are services, especially the fact that our EMA is four states large, and I know that the money is there, when I go in this agency and they try to tell me, "We don't have the funding for this, we don't have the funding for that," I remind [them, I was in] the same meeting [about funding] that these folks were in, I heard the same thing they heard. ... I do a lot of comparison. I'm like, "OK, if the folks in D.C. can get a certain amount of grocery vouchers per month, per family member or whatever, why can't we get the same thing if we're all supposed to be getting some of the same pot of money? What's the problem with that?"

Now, I might get in trouble for saying this, but I no longer have that problem, because they don't want to hear that from me anymore. Not to say that they give me anything I want ... But they don't argue with me anymore. If I go in and I say, "I need this," ... this is what happens. But that's me. Everybody is not like me. Everybody else doesn't hear the same things; they don't go to the same meetings that I go to. So they don't hear the information, so here I am, trying to spread the information to as many people as I possibly can. This is the money that's out there, you are eligible for this. You need to go and get it. You need to fight for it. It's there, it belongs to you. It was put there so you can get it. But a lot of people, like I said, are not as outspoken as I am about the services that I need.

Getting Involved in HIV Care Advocacy / What Can I Do?

In this section, HIV advocates who helped host the Ryan White town hall meeting discuss how you can get involved. We'll hear first from Christine Campbell, Housing Works' director of national advocacy.

What you can do:
First, [everyone who has spoken today, please] stay connected with this process and join with us. We have your contact information. Our goal here is to take this information and feed it back to you and [you] say, back to us, "No, get it right. This is what I really want you to say."

The other thing is that both NAPWA (National Association for People with AIDS) and Campaign to End AIDS are organizing in all states. So get connected with some of the folks who are doing this. You absolutely cannot do this alone. So we provide support for people to be able to do that.

Get educated! One of the reasons we gave you the information is that this is the basic stuff about what's going on in our communities. Believe it or not, you can actually start learning policy-speak. It can happen. You're going to start talking in acronyms! But being able to be educated about what's going on [is important].

The other thing we have given you is a survey. Fill out the survey and get that feedback to us, so we'll be able to collect concrete data as to what people are saying. [We want to be able to tell Sen. Kennedy's office:]

This minute, people are actually, of the people surveyed,

[This many people] are actually accessing services through Medicaid,

This many people have no transportation to get to their services,

This many people have child care issues, and it does need to be part of the core services,

This many people have nutrition issues, and it does need to be part of the core services, as well as the narratives that say, "This is what we want the legislation to look like. These are our non-negotiables."

Putting it that clearly, we cannot accept less. Also, use this network. All of us are available to each other: Larry [Bryant, national field organizer at the Campaign to End AIDS], Mike [Kink], Carl [Schmid], who just left, but I know he's available. Bill McCall, Nancy Bernstein. All of us are resources to you. One of the things we want to emphasize [is that] this is not about those of us who hang out on The Hill, it's about the people who are receiving services. Granted, some of you are hanging out on The Hill, and we love that, but sometimes we get it twisted that it's about Mike's advocacy that makes a difference. No, it's about you who are living with it day to day, trying to access services and make sure those voices get heard and represented, wherever we go, and are reflecting the legislation.

Next up is Larry Bryant, national field organizer at the Campaign to End AIDS.

The networks, the communities, the waiting rooms -- when you go back home, this conversation should continue. That survey's available online. Click here to take an online survey on your experience with free and reduced-cost services in the United States. People you know that have the same issues, the same questions, or different questions, make sure they have access to that survey, make sure they get access to us. This is just a link in a chain of conversations leading up to when we really need to be making our voices heard, but we can't wait until the last available minute before someone is signing an act that we feel like we've been force-fed. We have the opportunity to make our voices heard now.

Now we'll hear from Christine Campbell again.

If you want to do one of these "town hall meetings" in your community, just let me know. There are tool kits available, and we're willing to come to you and help you facilitate to make this happen.

And finally, we'll hear from Michael Kink, legislative council for Housing Works.

I was just going to say that the next 24 to 36 months are going to be the most intense period of concentration of health care needs for the American people in 40, 50 years. It's just going to be like in 1964 and 1965 when we were creating Medicaid and Medicare. If this community, our people, all of you guys, are mobilized, if you can speak and bring those 70 people to reporters, to senators, to members of Congress, if our networks can work and communicate with one another, we can influence this process and we can make progress. We can achieve our goals.

If everybody goes home and says, "This is terrible, and everything is bad, and it's too complex for me," they're going to [reauthorize this legislation] without us. They are not going to care about people with HIV and AIDS unless people with HIV and AIDS step up. They are not going to care about little providers and tough communities that don't have enough unless those providers step up. The big drug companies, the big HMOs, will get everything they need. They have lavishly paid people that will go and get them what they need. But our community will only get what we need if we get in there and work and fight together. That's why this is so important. This is the very beginning of the most important two or three years that there has ever been for AIDS.

Thank you for listening to these highlights from the Ryan White town hall meeting, which took place at USCA 2007. For more information about hosting your own meeting, contact Christine Campbell of the Campaign to End AIDS at 202-408-0305, or Campbell@housingworks.org. You can also fill out the survey, sponsored by the Campaign to End AIDS and the National Association of People with AIDS, by clicking here.

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